Wednesday, December 29, 2010

A Very Merry Christmas

This year I will not use words to sum up Christmas, I will let the pictures say it all. You will notice the kids have grown, Lily doesn't look like a baby anymore, Austin is a huge monkey man, and Lucas is his Daddies doppelganger.....I hope everyone had a great Christmas, I am sorry for the lack of posts, i have been super busy with work and being sick with this pregnancy. Oh and seeing i haven't posted it on here, I will share....I am having another little girl. The kids are thrilled, their sisters name is to be Elaina and according to Lucas, its a "beautiful" name and little girls should have pretty names, like Lily's name and my name....he's a charmer that boy...not sure where he got his smooth talking but I'm gonna have to keep an eye on him.

Love, Hugs, and Blessings

Saturday, November 13, 2010


So I have an announcement to make on this blog that if you are a friend on Facebook you already know.

I am expecting again. Lily is going to be a big sister, along with of course her brother's. I didn't want to announce it on here until I finished my first trimester and here I am 12 weeks and 5 days. So with that being said, I am due May 24th, and I am pretty darn sure this little one is going to be a girl. I have never been this sick before. I was a little bit dizzy with Lily, some foods made me sick, but this pregnancy has been a dozy. I have had to go to the ER 4 times, and the last time I went I was finally admitted. I wasn't dehydrated which was good after how much I was throwing up. But I lost 6lbs in under a month time, on top of battling with horrible migraines that were debilitating, and sleeping 16-18 hours a day. I am now on 3 different anti-nausea meds on top of 2 different pain meds for my headaches. My doctor is hoping that it has to do with my hormone levels, and nothing more serious. I am being monitored closely and already scheduled for a level 2 ultrasound and then we will be scheduling an echo shortly after that just to double check. I will be going in towards the end of December, maybe right before Christmas to find out if I am having a little boy or a little girl. To me I would be fine with either as long as s/he's heart is healthy along with the rest of their little body. But as much as I say that, I would love a little girl because then I would have 2 of each.

I have already talked with my doctor about having my tubes tied after this little one. After everything I have gone through with this pregnancy, my body is screaming at me, "No more, No more." So I am going to listen. I have always wanted 4 kids, so I am done. I am trying to enjoy this pregnancy to the best of my ability even though it has come at a REALLY unexpected time.

To clear up any question's, not that I really have to justify anything, but this child is not Chris's and I am 100% relieved about it. I am Completely thrilled, and so is my boyfriend. I am very happy, minus that Chris and I are still at each other's throat's dealing with court. He is trying to relinquish my rights completely from the yeah...this is a very ugly time. I miss my children very much but they know I love them very much and we still talk each night. I don't get to see them once a week like I was once able to. I have never felt so much anger towards someone in my life. With all that being said, I do not feel like disclosing anymore on here as this is not my own personal blog, this is about how Lily is medically. Which speaking of......

Lily is 36lbs and hasn't really grown any taller then she was a few months ago. She graduated from once a week visits to every other week visits, to now once a MONTH visits. I am so very happy and proud of my little girl and how stable she is medically. I know you are all wanting to see pictures and I promise I will post some here soon. I want to thank you all for all your continued prayers that I know you have always offered. She is doing so well and I stand amazed at all she has over come through her almost 3 years of life now.

I will update here soon, she has a cardiologist apt on the 16th. We have her echo at 10am and follow up with Dr.Rhee at 11am. So once we get the new news, I will update you all.

Sending my Love, Hugs, and Blessings,

Thursday, November 4, 2010

Tiredness and Pain

I am just so tired. Oh so very tired, emotionally drained, mentally drained, and very physically drained. How much begging does one have to do to see their own children. Pleading, trying to hold the tears from falling, and their voice from trembling while doing so, just so he doesn't hear the pain that he is causing. I can't let him have that satisfaction, I swore he would never earn another tear from me, yet that has been nothing but a failed attempt at the truth of the reality. I cry, I scream, I look towards the heavens and ask for strength and I receive none. I know I am not alone, I know He is here with me, but I just feel so utterly alone. The pain is overwhelming, it is suffocating. Sleep brings no peace, my dreams haunt me of my children's laughter or worse, of their pleading cries of wanting nothing more then me. I wake and I have all of their lovies snuggled securely next to me so my first morning breath is the smell of them. And as relaxing as it is to smell them, the pain surges through me as I realizes I don't hear their sweet little voices telling me they want breakfast. I never thought I would miss their constant fighting, but I would give body, mind, and soul to have it all back.

I feel like I am a failed mother and it makes me feel like my mother...and that is one person I have always strived to be nothing like. I try to tell myself, I am one day closer to having them back, but how many days am I away from having them all in my arms again? Everyone tries to reassure me with, "You will get them back, just hang in there." Well I have been "hanging in there" and it is getting harder each day, its like walking through a tunnel knowing you are only going to go further into the darkness, knowing that there is an end to it, there is a light at the end of it, but is it 50ft or 10,000ft away? I am walking a path that is filled with nothing but mountains and trials, I keep stumbling, I have blood on my hands and knees from where I have fallen, but I don't wipe it off, I just stand up and continue, I let the blood serve as a reminder of the pain I have suffered along this journey. A reminder of yes, this is one hell of a battle but one that I will make it through, I may not make it out unharmed, but I will make it out strengthened and exhausted. All worth it in the end to have my babies back. I would travel the world a million times, walk through the desert alone, or swim the ocean if I had to just to get them back. A mothers love is one of a kind, it is unfailing and never dying. I have said it before, it is not better then a fathers love, just different.

Tuesday, October 12, 2010

Inside my heart

Right now I have so many emotions, so much turmoil in my soul, it is becoming over baring and suffocating. Not knowing how to stay on top of it all, not being able to put into words how I feel about everything, it is reeking havoc on me right now. I am up, I am down, I plaster a smile on my face for all to see, trying not to show my cracks. But Monday about broke me, broke my heart, broke my soul, broke almost all of me.

Lily no longer comes running to me. She gets excited and calls "Mama, Mama" but as soon as she is out of the car she turns around and looks for daddy and grabs his hand. While in the doctors office its not my lap she wants to sit on, its daddy's. When she gets his finger poked, its not me she looks to for comfort, its daddy. She runs to him and buries her head into his lap, she offers kisses freely to him, while turning her head away from me when I ask. Only to get kisses once daddy says, "Lily give mommy a kiss." I never use to have to ask, she never use to run away from me. Its not fair, I carried her, she is mine, heart, body, soul, and mind. I struggled with her through everything. Being with her at the hospital every moment that I possibly could, daddy only being there for surgeries and then to come and pick us up or to come by for a quick visit. And now I am turned away from. She has not trust for me, I have always been the one to hand her over to the doctors. The one who has allowed them to poke at her. And now I am not there, mommy isn't there to pick her up in the morning. Mommy isn't there chasing her around the house. I am not there to hold her when she cries. I am not a mommy right now, I feel useless. I feel broken and pointless. I have failed my children by not being able to love their father, by saying I couldn't take a loveless marriage any longer. I failed them by not being there for them right now.

When we went to go leave the mall on Monday, after Chris "graciously" let me spend over an hour with my children, Lily was walking ahead with her daddy. I was walking behind hand in hand with the boys. While Lily got to the car before me and she didn't see me and I heard her screaming, "Mama, I want Mama." I couldn't run to the car quick enough, when I got there, and she saw me, she ran up and wrapped her arms around my legs and hugged me and held onto me for dear life. I almost cried right there but not wanting to explain the tears to Lucas and Austin, I held them at bay as I leaned down and picked Lily up. I wrapped her in my arms, I laid her head on my shoulder, and I whispered in her ear, "Near or far my Lilybug, mommy will always be right here with you." I tapped on her chest and gave her kisses all over her face. I had to put her in the car and she wouldn't let go. Having to pry her fingers off of me, having to kiss all my babies faces goodbye, how cruel. Lucas sitting over in his seat with tears threatening behind his eyes. Leaning over telling him "Baby don't cry, Mommy will see you again soon." Him sadly smiling and saying, "But I don't have next Monday off mommy." How do I look at him and tell him that I don't know when I will see him again. That I am at the mercy of his father right now. Until a judge tells me otherwise. Because going and getting them would start an tug of war and is frowned upon.

I ache daily for them, they are my first waking thought, and my last before sleep. I crave their smell, I long for their kisses, and my world rests in their pudgy little hands when I hold them. I miss them more then I have ever missed anything in life, trying my best not to have panic attacks when I hit my lows, knowing this won't last forever. But with each passing day, I feel this hole in my heart is never going to be mended. I just want this ache to hurts so bad...

My Dearest Lucas, My Precious Austin, and My Sweet Sweet Lily, mommy miss you so much and not a day goes by that I don't count until you are back with me. I love you more then you will ever know. I send you kisses, I send you hugs, and I send you my endless love.

Forever in my heart,
Your Mommy

Thursday, October 7, 2010

Come Home Soon My Loves.....

I cried myself to sleep last night. It was the first time in a while, realizing it does no good, only causing me a headache in the morning, but last night could not be helped. I have my babies pictures next to my bed and before the lights were turned off I stared into their sweet and innocent eyes. They were looking at me, staring into my soul, it was like I could almost hear their little voices calling me. Begging me to hold them, to snuggle with them. Asking me why I wasn't there with them, why it wasn't me tucking them into bed each night. Why it wasn't me saying prayers to all 3 of them at one time instead of individually at night over the phone. I should be singing songs to them while playing on the floor with them, building block towers or coloring. Snuggling on the couch with them watching a movie, fighting with them about clean up and bed time. I want to hear Austin say, "Mommy stop, you're embarrassing," while I am making up songs while cleaning. I want Lily tugging at my pant leg saying, "I Help." while doing dishes and laundry. I miss Lucas telling me his stories about school, about what level he beat of the Mario Kart, and his sweet kisses on my cheek out of nowhere, while throwing his arms around my neck telling me, "I love you so much mommy."
Not having them with me is like a piece of my soul is missing, like it was ripped out of me, with no chance of healing unless they are put back. A mothers love is different from a fathers love, not better, not more, just different. I carried those babies, I dreamed of their faces, of their smile, how they would look when they got older. How they would smell after their baths, their sweet innocent voices. They were mine from the moment I knew about them, I loved them before they were anything more then a little blooming bud with a tail. Each kick was the sweetest most treasured moment, knowing I could calm them down from inside me just but the sound of my voice. Singing sweet lullaby's to them, telling them about the world they were going to get to know, and how much they were loved. Worrying about if they were going to be healthy, crying when I found out about Lily's heart, all the while Chris not shedding a tear, never really grasping the reality of it. Those are my sweet loves, more to me then my life is. I live and breathe for them, I would fight the world to protect them, give my life itself for them. I want my babies back, not tomorrow, but right now. I want to fall asleep with them next to me, with their soft snores and sweaty heads laying next to me. I want them in my arms, I want to kiss their boo-boo's better again, I want to sit and sing nursery rhymes, and listen to them sing them back to me and listen to their silly mistakes with the words. I want to do what I am supposed to be doing, be their mommy. I can only imagine what it is going to be like they day they were returned my my arms, to my household. The day can't come soon enough. They may drive me absolutely crazy at times, may make me want to take a vacation, but such are the craziness of kids.....I would not trade any of it....not a thing...

Sunday, September 12, 2010

Stream of Consciousness

Sleep over took me once last night, for no more then 2 hours. Then I awoke to thoughts of loneliness and solitude. Trying my hardest to not walk down the hallway into my children's room again, but failing miserably. Reading a book to distract myself from my thoughts, never quite drowning out the ever turning cogs in my mind. Tomorrow marks the 2 week mark of my children being gone. 5 days ago I saw my Lily and Austin, but its almost 2 weeks since seeing my eldest, my Lucas boy. Each day gets harder to talk to him on the phone. The begging and pleading in his voice for me to come and see him. How do I tell him I am not welcomed at the home of his grandparents? How do I tell him that his daddy is keeping him from me? I reassure him I will see him soon and that I love him very much. My heart breaks every time he gets on the phone. He lost his second tooth the other day at school. I have yet to see that toothy smile. I hold his first tooth next to me and remember back to that day with fondness as I plucked it out of his mouth as it hung by a thread. Him giggling over the fact that he lost his tooth. My big boy, almost 7 years old.

Austin, who is so chipper, who thinks he is on a mini vacation at grandma and grandpa's, so blissfully innocent to all that is going on around him. Knowing mommy and daddy won't ever be living together again, but wanting to so much to be back in my arms. As I stood outside this morning watching the sunrise, it is once again hot air balloon season. I remember back to last year at this time, the first time I walked out the front door to take Lucas to the bus stop, and seeing a hot air balloon filling up right behind the back wall of the complex. I ran back inside to grab Austin, who was wearing nothing more then his underwear and still rubbing the sleep from his eyes. I took him outside and pointed, the look of sheer awe and excitement on his face. The question's that followed from his non-stop 3 year old mouth. Asking how they flew up into the sky with fire, telling him it was the hot air that made it possible, and the innocent response of, "Silly mommy, it's hot outside, there is plenty of hot air."

Yearning to hear my sweet Lily girls voice calling, "Mama....MAMA" when she awakes from her slumber. Walking into the room and her arms waiting outstretched for me. Getting half awake kisses with her crazy hair all over the place. Her, "Hi momma" as we walk to the living room and snuggle into the couch for morning cartoons. Her sweet singing voice of Twinkle Twinkle and half sang ABC's. What I would give to snuggle them all close to me right now. To smell their babiness, to kiss their cherub cheeks, to hear their laughter and squeals as we get into a tickle match. To be piled on in bed by them all. I know this won't be forever, but every day that goes by, is one more day of their childhood that I lose. It breaks me, but yet I smile for everyone else to see.

Only few people know how I really feel. Only few have seen my tears, because truly what good does crying do? He won't break me, he doesn't deserve any of my anger and frustration, he doesn't deserve one more of my tears. 7 1/2 years of this I went through because of my children. I know others have held on longer and stuck it out for the children's sake, but that isn't me. He didn't deserve any more of me, my smiles, my laughs, my kisses, so this is the end result. My children being whisked off in the middle of the night, and me left standing empty. Like I said, he won't break me, just make me ten times stronger of a woman then I already was. So Christopher, Thank you, thank you for all the crap you have put me through the past 7 1/2 half years. I'm sorry for all that I have put your through, I would apologize more, but you don't deserve it.

You don't deserve the goodness of our children every morning when you wake up. It wasn't you who tended to them when they were sick, it wasn't you who stayed up late nights, made ER trips, doctor appointments, it wasn't you who kissed boo boos, or made them dinner willingly. It was not you who bathed them because you wanted to, it was not you who started the bed time prayers routine. I sculpted them, I shaped them, why, because I am there mother, it was my duty but most of all its because they are my world. All you had time for was your video games. I hope they were all you wanted and more, because that is all you are going to have left when this is all said and done with. I hope they make you happy and keep you warm at night. Because it will never be me laying next to you in bed ever again. I will not wake you with breakfast in bed, I will not serve you dinner at the computer desk, maybe your mother will, but not I. I do not regret the past, I learn from it, and you have taught me much. Thank you.......

Tuesday, August 31, 2010

Echoing Misery

To most of you this blog will make no sense. So I will give a quick story... Chris and I are in the process of divorcing..and as of yesterday he took all my babies and left...taking them to his parents..and seeing we only have the one car...I am stranded...without my babies....So this little bit of writing below lets my emotions flow of what is running through my head at the moment.


The soundless noise echo's around my household, louder then the streets of time square

I find no peace, I find no ease when I close my eyes.

I hear child cries and I run down the hall to their room, only to see empty beds

Then trying to soothe myself back to sleep with a million thoughts racing through my head

My arms ache, my heart squeezes a little tighter when I see their pictures on the wall

Tears stream freely, unchecked, knowing they do no good to cry,

but they let the unrelenting pain out thats inside

I feel my self breaking, stumbling, preparing for the fall

Bruised and batterd, broken to pieces, I pick myself up off the floor

I remind myself this won't be forever

One day, one hour, one minute at a time

I know one day it will be so much better, I will have so much more

But for now, I look in the mirror and see the woman I have become

Silently asking what have I done

Not regretting my decissions, not second guessing my choices

Except for the one that started this all...sometimes wishing it could become undone

Then I think back to the reason my tears fall, and I can't regret that at all...

Sunday, August 29, 2010

Its a bird...its a plane...OMG WHAT DID THEY DO TO YOUR HAIR?!?!

My beautiful baby girl...long beautiful hair, wavy and cute, adorable just like her. Well as of Thursday afternoon she had that beautiful hair....As of Friday morning, this is what she looked like.

To say mommy was pissed off would be an understatement. She looks like a boy, my little girl looks like her brothers and it makes me cringe. When Austin was a baby he had these beautiful curls to his hair, and I was made to take him and have them cut off because he "Looked like a girl".... Well now I am on the flip side, my little girl with beautiful wavy hair, now looks like a boy because her grandfather decided she needed her hair cut. Mommy wasn't there to play pit bull and reaffirm that NO MEANS NO. I have told him time and time again not to touch her hair, that I trim the back and the bangs, and if I want it cut I will take her and have it done. But no...Daddy took the kids out to grandma and grandpa's and he turned his back and this is the baby he brings home.

I know to many of you, you are just saying it's hair, it will grow back, but it is the principal of the matter. I had even said before Chris left that under no circumstances was Lily's hair to be cut. I was dead serious. Well...supposedly all it took was daddy's back being turned for a few mins while buzzing Austin's hair for Grandpa to go Gung-ho on my poor unsuspecting daughters hair.

She is still cute, she always will be, but her poor head of hair...I feel like I should take her to have it fixed but at the same time I can't handle the thought of anymore hair being cut off.

Other then the hair, Lily is doing good. Nothing really new to report on the home front. Need to call and schedule an echo, but I don't feel that there are any changes to her heart, by how rowdy and active she is. She is growing like a weed and talking a mile a minute. She is also starting to sing around the house, that will be my next mission, to get her on camera singing, it is to cute.

Love hugs and blessings

Saturday, July 31, 2010

Your Long Over Due Update

Ok ok ok...I have been getting emails, constant IM's, asking how Lily is doing. How we are doing, so on and so forth. I guess many must have missed my blog titled Blogging Hiatus. I took a much needed break after starting to get a lot of ugly emails, many were telling me I wasn't updating enough wasn't sharing enough of Lily's life etc. So, I did the opposite of what many had been wanting of me. I needed to escape from this blog, the pressures of writing on it all the time. I made the consciences choice when I was pregnant that I wanted to share Lily and her story, that I wanted to share our trials, triumphs, and heartache with everyone. It was my choice, but after getting ugly comments, and not so nice emails, it truly made me reconsider why I was even doing it. To sit here, to pour your heart out on a blog, telling strangers the personal details of your life, then to have it criticized was really to much. So I took the last 4 months off to reflect over it. Spent time with my children, put the blog away, and just relaxed. Not having to worry about if I had written enough to make everyone content with how Lily was doing. I am back now, but I will not be updating as frequently as I use to. I have a lot going on in my life right now, and still do not have much time to dedicate to this blog as I once use to. Once life settles down, I will update everyone with its happenings.

So now onto what you are really here for. (I will upload more pictures later)

Lilyana is weighing in at a hearty and healthy 34.3lbs. She is standing at 38" tall, and is thick and sturdy. She is bigger then her cousin Maddie who is a month older then she is and hasn't had 4 open heart surgeries. Lily is enjoying childhood, climbing on things, beating her brothers up, getting into things she knows she shouldn't. She is a 2 1/2 year old little girl who enjoys the word "NO" and taking toys from her brother. I look at her in wonder and amazement at how resliant she truly is. Sometimes I forget that the last 4 surgeries happened, then I take her shirt off and I see all her scars. She calls it her "Owwie". I think it hurts her from time to time with the wire in her chest. When she falls and lands on her chest she screams bloody murder and ends up sitting down for a good 30 mins afterwards. She knows her limits, but she likes to still test them. Always wondering if she can do more, wanting to do more, but she knows she gets hurt easy. I see new bruises on her daily because of her being on blood thinners. Which we are still playing with the dosages, we go up, we go back down, we are to high, we are to low. She bruises insanely bad, she will bleed nonstop at times (not enough to warrant and ER trip mind you) and then other times when they poke her finger she won't bleed at all. She still has every ounce of stubborness she was born with, with determination of steel, taking on life, like taking a bull by the reigns. Watching the wonder in her eyes when she discovers something new, listening to her giggle, hearing her cry, and enjoying my snuggles, I can't imagine a day without her. My precious baby girl, she truly is my rock, she is what calms me down when its a bad day, because she will always remind me how precious life truly is.

Well there is the long over due update on Lily. I will follow up in about a week with some pictures of all the kids and our happenings of the summer so far.

Love, Hugs, and Blessings,

Friday, March 26, 2010

I Hate You.......

Today my daughter told me she hated me. She looked directly at me and said, "I hae you....I hae you." She proceeded to roll over with her blanket and bury her head on the couch. I stood in the kitchen stunned, wondering if I just heard what I thought I did. Did my 2 year old just say that to me? Then I looked over at my friend and asked if she heard her say it and she shook her head. Both of us trying to think of anything else it could have been instead of "I hate you."

Where did this come from? Well today was an INR check and with each comes a weight check. We have been battling with Lily's weight since surgery. This little tank, who use to eat food like she would never get any more, now refuses things she once use to eat with glee. I have dealt with a child not eating and being picky. Lucas prepared me in ten fold for that but I didn't ever worry about his weight like I do with Lily's. Now for a heart baby, she is huge. She is above the normal 2 year old curve for girls even without a heart problem, but it is the pure fact that her weight is fluctuating as much as it is, that is our main concern. Losing just under 2lbs in under a week and a half. Granted she has been sick, but she is not been in-taking the amount of calories needed for her little heart. So where does this leave us? Right back to were we started originally, with the icky yucky NG tube. Hence the reason why she told me she hated me today.

As I laid the supplies out, getting everything ready, she started screaming. As soon as she saw me pull out the bag that the pediasure goes into she goes, "No no no no, no no mama, no no." She held her hand over her nose, and ran the other way. Coughing and gagging in pure fear. Then as soon as it goes in, she held her nose screaming "Owww...Owww mama,Owww...take out....take out.." I just held her and rocked, there was nothing more to do. She calmed but she wouldn't look at me, she just wanted to lean against me. She didn't respond to me, in a way it was almost like she was shell shocked. Mommy was the bad guy, I am always the bad guy to her. I am the one that puts these dang tubes down the nose, I am the one who gives her yucky medicine, I am the once who gives her the owwie shots. I take her to the doctors, I allow them to poke and prod her. Most days she still wants me at the end of it, she will still curl into my arms and allow me my daily snuggles, but not today. Today she wanted to get far away from me. I tucked her into bed and kissed her good night, I told her I loved her, in which she usually always responds with, "Uvv Eww." Tonight she rolled over and put her back to me. It was a punch in the gut to me. Lucas hasn't even said he hates me, and he's 6. Austin is 4 and those words haven't uttered past his lips, but not Lily. She has a lot to be mad about, I get it, I would be mad too...she is to young to understand it all and what all of this is for...but it doesn't make it easier. I know come tomorrow she will give me kisses, and granted she will still have her tube, she is usually more forgiving the next day...usually...then again, she has never said she hated me either.

I know she didn't mean it, I know she loves me, but at that moment in time i made her mad, she used a word I didn't even know she knew...


Sunday, March 21, 2010

Blogging Hiatus

I have put my self on an unintentional blogging hiatus. More so because of the chaotically hecticness of life right now, but I have kind of hit a mental wall block with my writing. I can't seem to write anything that I deem worthy enough to publish on this blog. You would be amazed to see how many unpublished blogs I have lined up since before Lily's birthday till now. I usually have so many things on my mind when i am sitting down to blog, I can't hone in on the few things that need to be written about at that point in time. Instead it is word vomit, having no structure, and always bouncing. Most times I don't blog for long spurts, it has to do with my own personal mental walls I place in my way. I have plenty to tell, just cant seem to do it in the normal elaborate fashion usually do. So I will make this blog simple so you can know how Lily is doing, seeing that is what most come by to check on.

1: Night terrors- have calmed down, she still has them, just not as much and not as frequently as she was having them. More sleep for baby, more sleep for mommy, makes the house happy.

2: As many know who follow us on facebook, Lily is sick, kind of. She got a pretty bad ear infection, but she also has a yucky cough. Her chest is clear and her labs came back looking good, so the only thing that we all can think of is its just allergies. And in the McLaughlin household, if you don't have allergies, something is wrong with you. Still waiting to talk with Cardiology to see if we may be able to do breathing treatments with her, she use to have arrhythmia problems, so I am always over cautious about anything that accelerates her heart rate.She is pretty wheezy and can't stop coughing at night because of her nose draining down the back of her throat. She is sleeping with her mattress elevated, the humidifier on, with Vick's vapor rub on just to stop the coughing.

3: Lily's INR went out of range at a 7.7 level. To say it freaked me out was an understatement. When I did research in the beginning about Prothrombin time/INR levels, I learned what needed to be learned. I looked into what it means to go out of rage on the lower end and what it means to go out of range on the higher end. Being on the high end means there is an easier chance at internal bleeding when falling, along with brain bleeds, and trying to stop the blood flow all together if she was to cut herself. For example, a little poke on her finger from the doctors office took me 5 mins to get it to stop bleeding. For you and I, we would clot within a few seconds. Once home and talking with the Cardiologist office, we went off of her blood thinner to drop her range, and within 2 days she dropped back in at a safe 2.7, with a slight change to the Milligram dosage, hopefully come Monday all will be well and we will have it behind us.

4: We finally got Lily's at home INR Meter. I have to have a nurse "train" me on using it. But after reading the booklet that came with it, and watching it done twice weekly, I am pretty confident it isn't that big of a deal in doing it. I am excited to get started so we can readjust and be more independent with our time instead of being tied down with doctors appointments.

Ok, that is about it for now. I still am working on Lily's birthday post, such a horrible mama I am this year. I just can't find the right words to say in the post I need to write. I print these off for Lily so she can one day read them, so I try to make them worthy of her.

here are a few pictures, I hope to be back and blogging soon.

Love, Hugs, and Blessings

Saturday, March 6, 2010

Terrors of the Night

Screams or pure terror fill the nights of my household. Each night gets worse, yet you can't help to hope for it to be getting better instead. What am I even talking about? Well, Lily has over the last few weeks, developed night terrors. They have steadily gotten worse, in the beginning she would wake up maybe once or twice a night screaming, to which you would talk to her, calm her down and all would be good. 3 weeks later, she woke up 7 times last night, with bone chilling screams, screaming, "NO, NO, NO" and dripping sweat. My voice that usually soothes couldn't reach out to her, would only make her scream worse at times. I frantically tried to figure a way out to soothe her, and of course it all came down to the one thing her and I truly have in common for now, music.

I have a baby Lullaby CD, that has mostly Christian children songs on there, but the one song she truly loves and has always calmed her is "I Only Imagine". It isn't the version sung but Mercy Me, but it is a truly calming version of it. Putting that song on repeat worked for about a good solid 2 hours before the next rounds of screams started. Then I found she likes "Jesus Loves Me". For a little while I heard her lay in her bed trying to sing with it. She recently received a bunny for her birthday that plays the same song and she is in love with it.
(I will post a birthday post here soon, I know I am terribly behind)

45 mins after Jesus Loves Me, she woke again, sobbing and thrashing. I finally lost it, from sleep deprivation or pure frustration and heart break I know not, but I sat and cried with her. I finally sat and sang her the one song she always falls asleep to me singing, and when it didn't work I cried even more.

Never have I had to experience night terrors. Sure my boys may have the occasional bad dreams, but nothing like this. When I brought it up to the PCP, she said it is just the age. When I brought it up to Cardiology, they said it has more to do with Post Traumatic Stress then the age. She remembers it all, and most children don't have night terrors unless something traumatic has occurred in their life. Well Lily has had a lot of traumatic experiences that is for dang sure. And once again I am at a lost for comfort. I couldn't comfort her after her surgeries the way I would like, I couldn't take the pain away, I couldn't just makes it stop for her. Then here I am again, watching on the sidelines as my daughter screams in terror in her bed.

I prayer as I sing, I pray as I cry, I pray as I rock, that God will take these fears from her and soothe her where I can not. Hold her close when she wants me not. To surround her with nothing but pleasant dreams. And I ask that of you too, along with any advice if you have experienced what we are going through. I will endure it, but it is making her exhausted. She isn't getting good sleep and then she fights me for her naps. The circles under her eyes are getting darker by the day it seems. Any tidbit of advice would be great. I slept on the couch last night because even when she is sleeping, she still whimpers or shouts. Chris can sleep through it, I can not....An exhausted mommy is normal in this household, but it is about to get 10 times worse if things don't look up.

Love, Hugs, and Blessings

Friday, March 5, 2010


As many of you know, who are my friend on Facebook, the last couple days have been quite emotional for me. I have not wanted to blog, for fear of word vomit.I have been numb,closed off to the pain of everything. Now before many of you get concerned, nothing is wrong with Lily, she is in excellent health. This blog is specifically dedicated to one person. My best friend, girl friend that is, Sami-Jo. My partner in school and in crime (not in the, "Hey Mom, I'm in Jail" sense), my shoulder to lean on, my verbal punching bag in times of frustration, my best friend, and my sister.

Over the last few days I have sat here in a depressed state wanting nothing more to write something meaningful, yet not being able to slow my thoughts long enough to do so. You see, Sami-jo has moved to Georgia, to many it may not be much, but to me it seemed like a world stopping event. How could one person effect me so much you might ask. Well, through my almost 24 years of life, I have had only a handful of friends. Most acquittance's is passing, a friend for that point in time, one you remember, and share memories with, but not ones that share life altering events with. Sami and I have raised babies, birthed new little ones, experienced ups and Downs with our relationships, brinking on divorce, critically ill children, and divorce itself, together we have faced it all, never leaving the others side. Our children have taken baths together, played doctors, house, and unfortunately at a young age, shared a kiss. Going crazy together as we had play dates with five children from the age of infant to our eldest now 6. Sharing passions, dreams, and life trials, you can't help but experience a woven bond of friendship. Having our fall outs and disagreements, things were not always perfect between us. Yet with all that being said, without her a part of me seems missing. I mean, I have spent so much time with her, I have picked up a bit of a twang in my accent. As the old saying goes, "We go together like pea's and carrots."
That has always been a debate of who is the carrots and who are the peas, in the end it never mattered because we hate them both, cooked at least. Over the last few days I have been thinking about how much I am losing without here here. Friends for only 3 years, but seeming like decades. Completing each other sentences before things are even said. We joke that if one of us were male we would have been the perfect couple. But we aren't, and she is now gone. Trying to fill the void with someone else would be pointless, because there can't be another Sami. Sami is one of a kind, like a sunset, there may be the setting of the sun daily, but there will never be two sunsets alike.

Sami has started a new chapter of her life, and granted I am not there to share it in person, I will always be a phone call away to hear of the days happenings. I have to adjust to a "new" normal, seems like I do that often. And what i think cuaght me most off guard was having to do it for something other Lily and her heart. I like change, but I don't like change when it has to do with losing something dear to me. Yet, life goes on, there are planes, trains and automobiles, so we will never be far apart.

Dearest Sami-Jami;
Think of me often while you are out there. Chase a chicken for me and remember to stay away from the fences when you have had a few to many. I miss you so much already, as I was walking to get Lucas today, I looked out into our field, and things seemed to dim a little. (Just so happened the sun hid behind the clouds at that exact moment) AZ seems lonely without you, like something just isn't right. The thought of a girls night without you seems wrong, yet Lindsey and I are going to Starbucks tonight and then to the movies and I am sure you will dominate the conversation. You are my second half, without you i feel a bit chuckled didn't you, because you know you are the same way now...No one says, "HUH" like us, and no one can dance in the car like we can.I heard "Our Song" on the radio taking Lily to her apt today, and I smiled and cried. All i hear is you singing it, just like whenever you hear "Gunpowder and Lead" all you will here me singing it, all the while I am thinking, "Don't screw up the intro, don't screw up."

I have a mission for you ok, can you start looking for a field? You are in the country now, and who better to ask. Find me my field of dreams, and I will come. (Please tell me you have seen that movie) But joking aside, you find it, I will come out, Lily in tow, and we will make cute summer dresses and get straw hats and go dancing through the field. You up for that challenge? I might have to drag Kevin along for pictures.

I love you Samantha-Jo, forever and always. There will never come a day I say Sami-who. You are unforgettable, and I have been blessed to call you my friend. Love you sweetheart!
Forever Friends,
Your Jenna

Saturday, February 13, 2010

Do you have time for CHD AWARENESS?

I had written a blog in my head as I was driving the other day. It was going to be a carefree comical one about driving and hand gestures. After being flipped off, break checked (they seriously didn't read that blog) not shown appreciation at my courtesy, I decided I wanted to look into the history of hand gestures. When did the middle finger become taboo and when was the raise of the hand while driving considered a thank you? But after the turn of events that day, the subject at hand became a more serious one.

As this is my 2nd Heart Awareness year, I have been meaning to write a blog in tribute to it. I did one for Lily last year, I retold her story to the best of my ability, I was amazed at how well it was taken to. It became the number one read blog on cafemom at the time. It opened many's eyes to a world they never knew existed, it rang home for many who are in the world I dance in, and forced others who have turned a blind eye to the truth and realness around them, to open their eyes and see the heartache and reality this all causes.

What causes you may ask? Are you a new comer to our blog, if so, welcome. Please grab a Kleenex or a washcloth might be better. This year I will not share our story, if you want to learn more about Lily and what shes gone through, you can read last years blog here . Our blog talks mainly about living life with Congenital Heart Defects, copping with the stresses, and the ups and downs of it all. But CHD Awareness week is upon us. Did you know that? That February 7th-14th Every year is Heart Awareness week? 2 years ago I was completely oblivious to it, even though I had 2 children at home. I was unaware because they were and are heart healthy, why burden yourself in a world of heartache when you think it will never concern you? Heart defects don't need to run in your family, your child need not have down syndrome or a genetic disorder to have something wrong with their heart as many assume. Yet, many don't know this until they are pregnant with a heart baby (if lucky enough), catching it after birth, or for the rest, the heart breaking devastation of losing your child altogether. There are many cases of teenagers or adult athletes just dropping and dying from something heart related. Did you know that is usually an undiagnosed heart defect that they most likely had since birth. How do we fix this? Is there a cure? Well there is an answer to both of those questions and story in between.

First, there is no cure for heart defects. It is not something you can just slap a band aid on and say good to go. The definition of Congenital Heart Defects is; A congenital heart defect (CHD) is a defect in the structure of the heart and great vessels of a newborn. Most, (not all) require a surgical repair within the first few months of life. Even if a surgical repair is done, it doesn't "fix" the heart, it mends it. Many will lead normal lives, but for many others with sever defects, they have a long road of repairs, follow up appointments, and seeing a Cardiologist regularly for the rest of their lives. But lets go back to the beginning, in order to repair we MUST KNOW.

How do we go about fixing all of this unawareness and heartache?. Well that is all depends on who you ask. I will tell you I push for echo-cardiograms (just fancy name for what many know as an echo) of the heart, which in our case caught our daughters heart defects. Others will tell you a quick Pulse Oximetry test could be a life saving test also. Which I in turn will not deny, but it only depends on the heart defect itself. In our case it wouldn't have done our Lily much good, even though her heart defects were life threatening, they didn't cause her oxygen saturation's to drop into a dangerous or alerting range. For many other heart babies, a pulse ox is a tool that is a matter of life or death. For the babies who aren't diagnosed before birth, or shortly there after because of low apgar scores, a pulse ox test could save their lives. Most babies with low oxygen saturation's usually turn a blueish color, but not all. So here is the question I would like you to ask yourself now and then again at the end of this blog. Is a ten dollar test worth a child's life?

Why do I ask the question? Such a simple response, it should be a quick and easy yes but I want you to be yelling yes, and then telling all your friends who are pregnant, or married considering having children, better yet, your cashier at the supermarket, the lady standing in the same Walmart aisle as you about this little possible life saving test. If you don't want to do it for me, do you think you could do it for a little girl who's story will rock you to your core?

I would like to introduce Cora, isn't she a beauty? Such a beautiful angel isn't she?

Her story is such a bitter sweet one. She came screaming into this world with all her glory into the loving arms of her mommy and daddy. Such a beautiful perfect little miracle, gracing the world at 9:25pm on November 30th of 2009. Getting Apgar scores of 9/9, as close as perfection comes when being born. Going straight onto mommies belly to be cleaned up, then onto being adored by all. It couldn't get much better then that. Mommy and Daddy were wrapped tightly around her little fingers the moment she arrived. Woven in their hearts and souls the moment of being told they were pregnant. Wanted and loved forever. How could a baby get any luckier. Cora went home shortly after birth just like every perfectly healthily baby does. She was placed in her special going home outfit, placed in her car seat with care, and bundled for her first experience outside.

As many parents know, the first few days at home are tiring, down right exhausting. Trying to find a moment to rest but there always seems to be something to do. Then if you are breastfeeding mommy, you seem to be going around the clock, and Cora did just that. Daddy would get up with her cry, just to bring her to mommy. What a wonderful daddy, not many always hear the little cry. But Cora's daddy held her every moment he could. He couldn't feed her a bottle so he made sure to at least help mommy by bringing her their sweet precious little girl.

At just five days old, on December 6th, things went wrong. Cora cried, it was time to eat, so daddy once again brought her to mommy. Mommy and Cora settled into their chair, and with a bit of squirming and screaming, mommy finally got Cora situated and she was a happy little girl. Daddy walked away to sit down to watch a little bit of TV, he barely made it into his chair when all of a sudden mommy screamed. Mommy looked down and Cora's mouth and nose were covered in blood, she wasn't breathing. What was happening? This healthy little girl was eating just fine a moment ago. Daddy called 911 while mommy did CPR. Finally daddy decided it would be quicker to get into the car and drive to the hospital instead of waiting for the paramedics.

By the time they got sweet little Cora to the ER she was gone. The team worked on her tirelessly, but the doctors told them it was to late, their sweet little girl was gone. Mommy and Daddy went to see her, one last time, then all of a sudden they got a super faint heart beat. Was this hope? The doctors worked on her a little bit more, a few more minutes her little heart fluttered for, but then said enough was enough. The doctors once again told Mommy and Daddy she was gone. How unfair to have to hear it twice. How could any of this be happening? She was born perfectly healthy, nice and pink.

After an autopsy report was done, sweet little Cora was diagnosed with Congenital Heart Defects. Yet not a sign nore symptom at birth was present to alert them to any of this. With high apgar scores, with great coloring, beautiful cries, there was nothing from the outside appearance that let on to anyone there was something so wrong with her little heart. Could a simple Pulse ox test have saved this little heart?

In Cora's case we will never know. Yet shouldn't such a simple little test be offered to all babies before they go home? Why would a parent refuse a possibly life saving test? Like I said above, I am all for echo's, but not every one's insurances will cover them seeing they are about $5,000 a test. For the most sever heart defects, a pulse ox should detect it, it should bring enough alertness to make the doctors stop and try to figure out what is going on. How are you to say no to a small test as a parent?

Are you convinced yet? Are you saying, Jenna, stop it already we get the point, ask for the test. You can't be told no if you are asking for it. Granted this test isn't a guarantee, but it is a chance. A chance that one little heart could be saved from the same story as Cora's and Cora's mommy feels the same.

Kristine has now made it her life's mission to spread this awareness. Her life was ripped to pieces that dreadful day, her heart was ripped out as she fell to the floor in tears. We all have choices after life altering times such as these. As much as it hurts Kristine every day to get out of bed and some days she can't without the help of Cora's unfaultering daddy, she has a mission. Can you take the time to help her with hers? Our should I say all of ours? As a heart parent we always have a mission of awareness. How do we change things? One voice at a time, but if all our voices echo the same thing, the ringing effect is that much louder.

So once again, I ask you, is a ten dollar test worth it? Is it worth it to you, to take the 60 seconds it could take you to tell another? Is it worth it for your child? Your friends? Your neighbors? Your servers? Awareness is only made by taking the time to make others aware. Cora's story needs to be shared, to make other's aware, because unfortunately, there are so many other Cora's out there who's voices weren't heard, who's stories go unknown. Every story such as this should be told, it should ring in the ears and minds of others. Let Congenital Heart Awareness be brought to light and the attention of all. The only way of doing so is by your help. One person at a time. Are you up for the challenge?

I challenge you to tell at least one person, a friend, a relative, and see how many people they tell. If you don't want to do it for me, will you do it for Kristine who's arms ache for her little girl who was ripped from her so suddenly? For Cora who became an Angel before she should have? For all those little ones who were lost to something they never knew they had. To those who fight a brave fight through surgeries but still lose to it anyways? To those who still fight, who endure more then any child should have to? Are you up to it?

Think of that the next time you are having a conversation that is lagging, it could be filled with awareness, you could help save a life. You could help one less set of parents ache from losing their child.

I make it my goal because of my Lily, but those of you who don't have Lily's or Cora's, could you do it for us?

We thank you, from the bottom of our hearts, from the bottom of our broken yet mended hearts.

With our love, our many of hugs, and blessings to all,
Jenna McLaughlin- Proud mother of a Princess CHD Warrior, who has under gone so much, yet fights on.

In our many thoughts all of our dear sweet warrior angels, may you stay close to your mommies and daddies during this time or heart awareness. You are gone, but never forgotten.

Monday, February 8, 2010

NG What?!?!?!

It is nice to be home after a brief stay on the 7Th floor. We were on contact precautions, which for those of you who don't know, you have to gown up and wear gloves when you are bedside. Needless to say, me and the gowns became good friends, because Lily wanted me to hold her all the time. I wanted to lay next to her but she wasn't having it. Lily grew bored rather quickly, so instead of watching her Barbie movies, which were getting redundant, even for her, she decided that she needed to help with the plugging in of her monitors. Believe it or not, she actually got them all right once or twice. We didn't give her to much grief for this forum of entertainment, she didn't need to be on the monitor all day on day 2.

During the stay, we lost Lily's last IV site, and unless we wanted to put a central line in, which we really didn't, we opted out for the good ole' NG tube. Now for those of you who read my posts during Lily's last surgery, you will remember me talking about how we had one in but the doctor told us to pull it. As much as I hate the thing, I know in all honesty right now it is our safest bet med wise. I hate her throwing up her meds, or me having to hold her mouth shut and her throwing up and swallowing it. Just thinking about it makes me cringe, but with the blood thinner, it is not a force to be reckoned with. Tylenol or Motrin, if she didn't take them, ok, same with Lasix, it was what it was, but not the blood thinner. And then with her recent weight loss, the doctors finally relented and realized mom was right, and for now the battle of meds are nothing more then telling her not to gag as I push them through the tube.

I hate seeing her like this. When I have to change tape or reposition it, she gets her No-No boards on, that is truly sad to see. She is so pathetic as she holds her arms out for you to put them on and whimpers, but yet she doesn't fight you. Its like she has the will to fight it, but doesn't because she knows it has to be done. Although, she had a look of triumph on her face when she pulled it out on accident today. She rubbed her nose, took a few deep breaths and grinned.
I cringe at having to hold her down, reaching into the basket of supplies which was recently used for toys. Our hospital baskets as many know them by, have always been used for blankets and medical supplies, but recently I emptied them all out and put her toys into them. It breaks my heart to have to empty one out, solely for the use of the NG medical supplies. To deal with home health care supplies again. Just one more phone call to add onto my 10 daily I deal with. Many of my friends wonder why they don't hear from me these days. Between calling about an at home INR meter, dealing with insurance, case managers, prescriptions, and doctors offices, now I have to deal with Apria home health care. Once I wrap all those phone calls up, as much as I love my friends, sometimes I just don't have the energy to talk, or the brain span to. Life is so hectic these days, and as much as I know they are for the better, sometimes I can't help but want to go back to the days before this last surgery. Some days I ask myself did we truly make the right choice by putting the prosthetic valve in? When we go for INR meter checks she still has to be poked 3-4 times, because she just won't bleed. I hate needles, I hate being poked, I can only imagine her. I just want to throw my hands up and scream stop, just leave her alone. Take me instead...yet we all know that can't nor will it ever happen. I can't wait for what the future will bring with medications, because I hold hope that sometime in the span of Lily's life they will come up with something new, where she won't have to get poked all the time. She won't have to hurt all the time. Granted what is a small little finger or heel poke, when you might never have to have an open heart surgery again. Truly, that last sentence is all the keeps me sane most days.
Thank you to all my friends for your sincerest prayers and well wishes. Truly, I couldn't get through the day without God's help and I truly feel his presences around me in my time of chaos. He is the well needed breath of fresh air that blows me in the right direction. He washes over me like a wave washes over the sand, and with it he brings me comfort, strength and clarity.
Love Hugs and Blessings

Friday, February 5, 2010

Lesson Learned

I have learned a few things today that I felt needed to be shared. I figured if we ever learned from others mistakes here are a few you should jot down into your mental notebook of do's and don'ts. What are they you are asking? Patience's young one, wisdom comes onto those in bad ways when you are to eager to know. I very rarely mention Karma, this would be a time I do... Alright Alright, on with it we go...

1: Don't take NyQuil when your significant other does so too. This is a recipe for disaster. 3 children, plus parents druged out on help you feel bed meds....Why did I take it you ask? Well I had such a brutal headache when I got home, I had taken 800mg of my Ibuprofen along with Tylenol and well, that was a no go. So I figured I needed sleep and it would be a cure all. Well duh Earth to Jenna, 3 sick kids, a sick husband, you sleep...HAHA...if it wasn't your insomnia keeping you up, it is the responsibilities of being a wife and mother.

Lesson? Say it with me here, NyQuil BAD, insomnia good when household sick.

2:(This is a biggie) When getting ready to go in for an echo and you are walking towards the door checking that you have everything. Do not look at the pre-made hospital bag from the night before and scoff at it. I mean it wasn't out loud or anything, but it felt me mentally mocking it. I was...I was thinking, HA HA, we narrowly escaped the 7th floor and beeping monitors...HA HA parade of mocking was rained on shortly after arriving...HA HA HA...damn bag got the last laugh...

Lesson? Don't ever mock...Mocking is rude, it is mean, it may be funny for people who enjoy sarcasm and a power trip...bad for when it gets thrown back in your face. Not sure about you but I don't enjoy when people laugh in my face...and I sure as heck don't like the flippin bag laughing at me....DON'T MOCK THE BAG!!!

3: While driving, the radio sucks. I go through all the stations it seems and nothing is good on. Christian, Country, Hip-hop, where am I going with this? If you have an MP3 player in the car, it is will make you feel like an idiot especially if you have one of the cars with all your volume controls and stuff on your steering where... Anyone see where I am going with this?............................... NO...ok so well lets just say, I have one head phone in my ear, because duh you don't drive with 2 because you have to hear. I always put it in my left ear because I am partially deaf on that side anyways, so I figure I can at least listen to something good, while still paying attention to the traffic around me. OK off track! So, when you have your earphone in, and it doesn't seem quite loud enough, as good of an idea as it is to not look down and play with your MP3 player to turn your oh so wonderful music up; it also doesn't help if you tried turning it up via steering wheel button. Lets hear a major DOOHHH for Jenna, because if I didn't already feel like a dork, I do now after admitting it.

Lesson? MP3 player good music but potential hazard for a blond moment, proceed with caution.

here is the last one....

When driving 5-6 mph above the recommended speed limit know it is ok to do so when and officer besides you is doing 5 more then you are. And when you are in the carpool lane doing 5-6 over, and get break checked, remember not to lay on your horn when it is a police SUV ahead of you. They are not fond of the horns. But seriously in my defense, I wasn't tailing him, he just literally break checked me it seemed. Like...Hey behind me, i can tell you are going a little faster then the 65mph posted speed limit, and even though you won't get your picture taken by photo radar, I truly have nothing better to do with my time then brake check you to make sure you don't get to where you are wanting to go in a timely manner.

Ok Ok, that may have been a bit of an exaggeration of what Mr.Police Officer was thinking, but seriously, what was going on in that brain of his when he was like...OH...Break check. There was no one in front of him, there was no reason for him to stop like that...he seriously just wanted me to slow down. OK..dually noted, don't go as fast as the police when behind him. I guess on the up and up serious note, he didn't pull me over and give me a ticket for honking at him...can you get a ticket for honking at them? I don't doubt it.

Lesson, police officers rule the road, if they want to break check, they can break check and there is not a dang thing you can do about it. Any inferiority complex you may have about your driving skills or the lack there of in some peoples cases...just remember, they will put you in your place. I will remember this point the next time i get the urge to break check someone, which in my case, I get the urge a lot.....I swear I am not an aggressive driver...maybe a tad bit vocal but not aggressive..

Well, it is midnight, I should get some rest, I am exhausted. Lily is sleeping so that is my exit Que to say nighty night. Goodness knows we will have another long day ahead of us tomorrow. They come around for x-rays way to early for my liking. Guess I should suck it up and stop my yapping.....

Thank you for your prayers

Love, Hugs and Blessings

St.Joes...our home away from home

Yup, that's right, we are back at St.Joes. We were at the ER yesterday and they were thinking about admitting us, BUT, she looked good enough to go home, so home we went. We had to come back this morning for a follow up echo, (everything looks great) and she still was feeling and looking like crud. She is retracting really bad (bobbing of the head while breathing, and tugging under the ribs) She has a yucky cough, and her X-ray came back looking hazy but they don't think it is pneumonia, not sure what to think yet.

We had got an IV placed on what seemed to be her last vein only to loose it a few mins later do to the fact we were drawing blood from the other hand, and all her twisting, turning, and fighting, she pulled the other one out. Not sure what we are going to do. She has so much scaring, along with all her veins being blown. This stay is going to suck. Her respiratory rate is high along with her heart rate because of her fever. Her o2 saturation's are holding at the 95-96 area on room air so hopefully we don't have to put a nasal cannula on.....she is sick and miserable and mommy is just pure tired. Chris and the boys are at home sick also. Knock on wood, I have yet to get whatever this is and I am truly down on my knees praying I don't get this. I don't have the time, nor do I have....well the time for this. I am hoping for once my immune system holds strong, which usually doesn't happen BUT one can truly hope. Chris is usually the last to get anything so...yeah...(Wow, I can't believe I just said, So yeah...I feel so high school right now.) I am so stinking tired, I listened to all 4 of them cough in surround sound last night, Lily puked last night from coughing too, and the boys were up and down. I came to the hospital today totally unprepared, I am using one of the floors laptops right now, and lets just say I am not fond of it, but it will do for now. I need to go home and get what I need but I am so stinkin tired. It will be a long few days ahead of us, but nothing we are not unable to handle.

She will be getting a NG tube for fluids right now seeing we are unable to get an IV in place. As long as she holds her fluids down that will be fine, but if she starts vomiting again then we will have to try to find another vein...say a prayer it doesn't come to that.

All in all, she is just got a cruddy cold that is kicking her booty. Please pray for an uneventful stay and a fast recovery. There is no place like home for us. Hopefully in 24-48 hours we will be back in the comfort of our own home.

Love Hugs and Blessings

Friday, January 29, 2010

Help Jakey Blankies

The below post is taken from a fellow heart mom's page. She is asking for donation's in helping make more of these fabulously soft blankets for the heart unit Lily was just at. These blankets are incredible, they are so soft, I want a big one made just for me it is so soft. But getting to the point. As you will read below, they are a huge hit on the floor with all of the babies and parents, and more are needed again this year. Any little bit of a donation helps towards this. As heart parents we always want to try to give back, but as a heart parent with an Angel, we always want to help the legacy and memory of the baby live on in others also. So please, any little bit helps, see Lily loves her Jakey Blankie(we received ours during our last stay). To help donate you can follow the directions below, and to get to Jake's page, just click HERE. We are all quick to donate to Cancer Foundations and Relief Funds, but lets take in account all these little ones who endure so much. Heart babies don't get the media attention needed, so in the mean time lets help make them as comfortable as possible.
Sincerely Jenna

Hi Everyone,

This is a HUGE plea to anyone that is listening!! I am doing a jakey's blankies donation drive over the next week and 1/2. I want to try to earn as much money as possible to make blankies for the heart unit that Jake was in. I know it won't be nearly as much as we earned last year, (We were able to make 120 blankies!!)

but even 50 blankies would be a miracle. The heart unit has had a HUGE response to these, both by the parents and the children. The parents snuggle with these blankies while the children are in surgery, and the kids snuggle with them the rest of the time. I LOVE it!
So, here is my plea:
I know times are tough, but if you are able to spare even $5, please donate to Jakey's blankies. You can donate on my paypal link (just to the right-it takes credit or debit cards or paypal payments).
Or you can mail a donation to:
Jakey's blankies
c/o Bishop Anderson-Summerfield Ward2791 E Los Alamos CtGilbert, AZ 85295
Please Make checks payable to: Summerfield Ward

Also, if you are able to copy and paste this post into your own blog, or put a note on your blog about the donations, I would really appreciate it. I want to get as many donations by Feb 9th (Jake's Angel day)-but I will never turn donations down! :)
Thank you all for the donations so far. I want to do as much as I can for Jake, and this is one of the last things I can do that will keep his memory alive at the hospital.
If you have any questions, please e-mail me at:

Wednesday, January 27, 2010

Endurance and Serenity...No place like home

It has only been a week since we had been at St. Joe's, but it seems so much longer, and yet so short. Hospital stays seem to move at a faster pace, to where 12 hours only seems like 3, and 1 weeks seems like 2 days. (This is only while you are actually at the hospital. When you are at home time moves by as it normally does.) Yet, as you watch day by day, you see the recovery process and it is such a slow one. Ours was a bit faster then normal, or should I say Lily's was. She has lost roughly a pound since check in, though you look at her and you could never tell. She doesn't look like she had surgery 7 short days ago. She is a trooper, she endures all that is thrown her way and still smiles: sort of, (Abby, Alicia, Jamie, you all share the experience of Lily in not such a happy mood) You can't help but love her, she gives you faith, hope and courage. She gives me strength and courage as I face the new part of our lives. I am up for the challenges, as she has never made things easy in the past when trying to over come hurdles.

As we got ready to head home all the normal fears ran through my mind. Is she ready to go home? Have I learned everything I have needed to about her at home care? Is this truly the last time we will embark on a surgical journey? Will we never have to sit the long hours in the waiting room ever again? Will I never have to deal with the long weeks before surgery again, and the sleepless nights leading up to it? It all seems surreal, like I have dreamt it all, that Chris will come in and shake my shoulder and tell me it is time to get ready to head to the hospital for surgery.

I have a sense of serenity as I look ahead. I see nothing but blue skies and steady sailing. I am in no way saying there are not going to be bumps or some rough seas to over come, but nothing of the extent of the last 2 years. I look towards tomorrow with a grin on my face, I can actually see myself with Lily dancing in our Field of dreams. With our matching sundresses and hats.

Since my pregnancy, I have not dared dream that dream, but yet I feel it within my grasp. Who's up for helping me find a field to go dancing through? Who wants to join us for it? My heart is light as I type all of this, tears burning behind my eyes because of the happiness I feel. As I listened to the beeping of monitors and the alarms of others, it hit me in full force that we will most likely never be on the end of those again. They will be nothing but a memory to me, to her, to all of us. I should never have to tell the boys again that their sister has to go in to have her heart fixed. I will never have to watch them cry their tears of fear and confusion and hear "Why is sissy's heart broken?" "How long will she be gone?" "Is sissy coming home?" "Mommy, can't the doctors just make it better?" The innocence of children.
As I look at this picture of Lily on the toy, I can't help but think of the many miles I walked around the unit just to get her to settle down from her restlessness. I also see an NG tube, something we hopefully never have to deal with again. Although, after being home not even 24 hours, her puking up 3 meds kind of has me rethinking that previous statement.

She captured the hearts of many up on the floor, she gave others hope that there can be a future. She did to others, what others use to do to me. I remember when she was a baby, I would see older babies, toddlers, and children on the floor, and I would think to myself, "There is hope of tomorrow." Even when the doctors try to reassure you, sometimes you just can't grasp that reality, but seeing other children helps give you that hope. Lilyana has always given me hope, but I am truly glad when she gives others that same hope.
We are home , I still can't say that enough. We have to get adjusted to the 2 times a week blood draw until we can get a home INR Meter. After talking with a friend we are going to try to set up an auction to help pay for the meter which cost $2,000-3,000. It is extremely pricey but this is something that will be used for the rest of her life. It will stop us from having to go into the lab and having a tube of blood pulled. INR test meters are like checking your sugars, a little poke on the finger and you are done. Many wonder why we don't have our insurance pick up on it, well here is the thing. Blue cross blue shield does, but it will take them months to approve it, then trying to find a supplier who is networked with our insurance, lets just say near impossible. But if you pay for it out of pocket, once the insurance approves it, you can submit your receipt and then they will reimburse you. Yet they will not pay for the supplies and testing strips and such so it is all out of pocket costs.
All very frustrating things, yet I will take the frustration. We will get things settled down and put in place, we just need a few days of being home to get things under our belt.
This was while we were still at the hospital, there is nothing better then Daddy's arms. She is a daddy's girl through and through. She would scream and cry when he left, he never could stay long enough for her liking, and when he left he didn't take her. It broke both of our hearts, so it was beautiful joy to watch the two of them tonight when we got home. Daddy loved on his girl and she gave that love right back.
This photo I am going to have framed, it made me teary when I took it, and it makes me teary looking at it. He use to say he didn't want a girl because they are to much trouble, well she may be trouble, but she is beautiful trouble. And trouble has daddy wrapped around her little finger.
Well this wraps up this blog, my little princess is sleeping away in her playpen in my room, so I think it is time for me to head that way also. Tomorrow is going to be a long day of shots, blood draws, and forced meds, yet even with that awful line up, all I can think is, "We're home."
My heart could not swell any bigger tonight then it is right now, I am so proud of my little girl and all that she has endured over the last 2 years. As I look at this last picture all I can think is, She truly is a Princess Warrior, who deserved nothing less then a ride in her wagon chariot!
Goodnight everyone! Thank you sincerely from the bottom of my heart for everything. To all my heart mom friends who stopped by; Heidi, Molly, Melodie, Erin, Bridgette, it was great to see you all! Then to the new heart moms I met, Abby, Jamie, Alicia, it was wonderful talking to all of you, meeting your little ones. You kept me company during the fast long days. As we all know, sometimes company up there on the 7th floor is usually what keeps us grounded.
Ending this blog I am going to ask everyone for their prayers tonight, not only for Lily, but for a special heart friend of Lily's. Baby William, (Abby's little boy), is having a bit of a rough go lately. They were supposed to go home today also, but with some recent finding in an echo, they were detained. I was kind of hoping we would all be sprung on the same day, but dear little William seems to be eating up the attention he is getting up there. May his next echo on Thursday prove better then the first, so he can then be released and go home and spend time with his family!
Love, Hugs and many Blessings

Tuesday, January 26, 2010

These slippers were made for walking.....

And that's just what they'll do, one of these days these slippers are gonna walk right on past you.

Our out look on like is so much different, but for now it is time to say good-bye to the hospital and head on home.
I will post again later.
Love Hugs and Blessings
Thank you to everyone again for all their thoughts and prayers.